Sunday, April 17, 2011

Our PT Theresa let us borrow her daughter's bike with training wheels. We've tried it a few times at therapy--it was a little challenging at first.

But--after raising the seat, and adding a few velcro straps to the pedals--VOILA!

SHE LOVED IT!! The bike frame is a little too small for her. No matter--E was very proud of herself, biking solo through the puddles (we've had tons of rain lately) and up "hills' and over "cracks", and over a bridge (this trail is pretty flat overall). She still gets frustrated if she gets stuck; she sometimes forgets the mantra of "up and around" with the pedaling motion, and once she almost tipped over, despite the stability the training wheels provide. We tend to guard her closely, to give her a teeny push if needed--to ensure a successful ride. We'll definitely be doing this again!

Monday, April 11, 2011

I had the pleasure last weekend of attending a play. Now, let me be honest...when I get a break, or a chance to unwind, typically I want popcorn/bubblegum/gossip rags/sleep/mindless Netflix/sports--the last thing I want to do is deep thinking.

I read an article about Gregg Mozgala last year (or maybe later than that, I can't remember). He's an actor/writer/performer, and he has cerebral palsy like Elena. The article was, in essence, how Gregg's physical control of his body--gait, balance--was transformed by a ballet instructor who mentored him. Naturally, I immediately tried to find his contact information so I could write him about his experience, and see if he had any pearls of wisdom for me. No luck.

Through the Facebook grapevine, a few weeks ago I saw that he had a new website up--complete with upcoming performances. And one was in Northern Virginia--close enough to make the drive. I bought two tickets.

Diagnosis of a Faun

(I'm really tired here...hope i don't mess this recap up too badly)

Created by Tamar Rogoff, this piece investigates healing through science and art. Set (more or less) in present day, the play begins in the forest home of the Faun. A Ballerina enters the forest, capturing the Faun's attention--but during her dance, she falls and tears her tendon. The rest of the piece is set in and around a hospital, with doctors trying to heal the Ballerina. The Faun is also studied by the doctors as an example of how modern medicine would address his alignment/gait. The actors explore the juxtaposition between reality/fantasy, doctor/patient, human/beast, love/loss, empathy of looking at the whole person/stoicism of treating an acute injury. Or, something like that.

There are four players in this piece; Gregg stands out for many reasons--wearing only a loincloth, and being the only mythical creature being two obvious ones. Maybe the other theatergoers were watching the actors equally--but my focus was on Gregg and his movements. He started the play on a rock structure, at least three feet off the ground, with staggered rock steps leading up to the uneven platform. He moved all around the space; running, jumping, leaping, starting, stopping, getting up from the floor and back down again, forwards, backwards. His gait is imperfect; he has an obvious CP gait. His knees buckle in slightly; he appears to have tibial and femoral anteversion, like E. Several times during the piece I see his legs pulsing, either from fatigue or clonus. He can put both feet flat on the floor--but it seems that he has to think to do it--every time. He stands frequently with his weight on one leg, flat; the other, toes curled under, dragging slightly behind. So familiar.

I also saw a man. A grown man, independent and brave; a powerful, masculine, sexy, talented, strong man. A man, who went through the aches, pains, failures, successes, and mistakes that every person goes through while becoming a dancer. An individual who had to develop trust with a partner. Just...a guy, a performer, an artist, who happens to have CP.

My father and I got the opportunity to talk to him after the show. I hoped that we would...I wasn't really sure what to say, but it related to how he was able to move like he did. To me, he never stopped moving like a guy who had CP; but he moved wonderfully, and in a way that I hope and pray E will one day. He mentioned that growing up, all this therapists, teachers, doctors--everyone--was trying to get him to move like other people. And, why not; that's the best way to move for proper body alignment--and that was his only example. All the focus was therapy, exercise, repetition, try harder, relax, etc. He said the big breakthrough for him (in the beginning of his dance training, he said just thinking about stepping made him fall "all the time--ALL THE TIME") was putting the focus on the chest, the midline, the breath. He studied Alexander Technique, Yoga (I think), and through dance--found a way to better connect with how he moved his body. I said that sounded like a very mature concept--which he agreed.

While I'm not going to stop E's normal therapy schedule--PT, CME, sports, dance, {insert what she wants to do here}, this concept sounds a lot like Feldenkrais and Yoga. Focus, flexibility, strength, from the breath, from the core.

Don't ask me how you get an almost 6-yr old to absorb all that...but it's something I'll try to foster as E gets older, as best I can.

Thanks to Tamar and the cast and crew for a fantastic, intimate show. And although you've probably heard this many times before--Gregg, you are a fantastic inspiration. Thank you.

Sunday, April 3, 2011

We did a little bit of Feldenkrais last year. Then there was a big break--partially because we were busy, partially because it's expensive, and partially because I wasn't sure if it was worth it. I thought our practitioner "Mr. Keith" was good, but I wasn't sure if that's where we should spend our time and money.

We decided to revisit Feldenkrais right before and right after E's lengthening surgery last November.

And we're still doing it.

WE'RE COMMITTED.

It's not like some magic switch...but I feel like our "regular" PT (a mix of CME and traditional PT) and Feldenkrais, post-lengthening, really have come together in this "perfect storm", where E's some sort of super sponge and new things are happening all the time. We do F'krais 2x/week (Mondays and Saturdays). Elena loves her time with Mr. Keith. And while she doesn't come out of each session magically running around as if she didn't have CP--we see changes. So does Keith.

If you're not sure what a F'krais session looks like, Keith prepared these videos. It's great commentary, and every time I see something like this...I'm reminded of a little girl, who could barely stay in a sitting position, and who stood literally on her (right) ankle--instead of the bottom of her foot.

Friday, April 1, 2011

Elena will be 6 years old on April 30th! My little 3 lb, 5 oz preemie is turning into a little 32 lb 38" (ish) 6-year old! (YES E is TINY TINY.)

If you want to send E a card, SHE LOVES MAIL and is a great little reader (we can't spell between us parents either, b/c she can figure out what we're saying). If you'd like to send E a birthday card, or birthday drawing, or a picture, she would LOVE IT.

Recent Doodle Updates

INSTAGRAM

Search This Blog

Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.